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Friday, 8 July 2016

I am currently getting about 900 views a day on my blog - I have no idea why and it would be great to know because if any of my posts have been linked to from somewhere and are turning out to be really useful then there might be more I can do?

EDIT' A full abdominal hysterectomy and bilateral salpingo oophorectomy has gotten in the way of this and I have had to put it on hold. Once I'm fully recovered I am going to do the challenge again - the full distance in the same number of weeks, just at a different time. I'm sorry!!My fundraising page:https://www.justgiving.com/fundraising/sarahs350

Scroll down to the bottom of this post for the list of distances and dates so far :-)

Why I am running 350km:

Hello!

I type this almost 2 years to the day that I was diagnosed with breast cancer. I was 33 years old at the time. Breast cancer had recently killed my mom, and before her, my grandmother, so I was terrified. I really thought I was going to die.

I joined an online support group for young women under the age of 45 with breast cancer in the UK. Not only was the wider group support amazing, but I also formed some incredibly close friendships with other women my age who were undergoing treatment for breast cancer.

Since then, 5 of the women I became close friends with have died.

Claire's breast cancer spread to her brain. She had had a mastectomy and chemotherapy for her primary breast cancer but while she was undergoing that treatment, the cancer had spread to her brain. By the time the doctors were able to identify that the cancer had spread, she was given a matter of days to live. She had just turned 30 when she died.

Jojo's breast cancer spread to her liver. She was diagnosed with secondary breast cancer before she had finished radiotherapy for her primary breast cancer. Her doctors told her she may have 6 months to live and sadly they were right, despite further chemotherapy. She had just turned 32 when she died.

Rosie's breast cancer spread to her liver. Rosie was diagnosed with secondary breast cancer just as she had finished chemotherapy for her primary breast cancer. She underwent 6 more months of gruelling chemotherapy. She was 38 when she died, and leaves behind 2 young children.

Kate's breast cancer spread to her bones and her liver. She had completed treatment for primary breast cancer in the summer of 2014, and was getting on with her life, but in Spring of 2015 she felt a lump by her collarbone. Scans showed the cancer had been spreading and was in her lymph nodes, liver and bones. Kate also had several months of gruelling chemotherapy that was unsuccessful. She was 37 when she died.

Danielle's breast cancer spread to her liver. Her secondary breast cancer diagnosis came a matter of weeks after getting a clear MRI scan following initial treatment. Her cancer was so aggressive that she only had one round of additional chemotherapy before she died. She was 32 when she died, and also leaves behind 2 young children.

When you are first diagnosed with cancer, you think that's the worst thing that can ever happen to you. It isn't. You soon learn that the worst thing that can every happen to you is to be diagnosed with secondary breast cancer - ie breast cancer that has spread from the breast to another part of the body. Secondary breast cancer is currently incurable.

Secondary First is a charity that has been set up by my friend Rosie's husband, family and friends to raise money specifically for research into finding a cure for secondary breast cancer. Secondary First itself is being run by volunteers. All money that Secondary First raises will go to Breast Cancer Now, specifically for secondary breast cancer research projects.

I wanted to set myself a challenge to fundraise for Secondary1st. Many of you will know that before cancer, I had gotten into running, but the various cancer treatments and surgeries over the last 2 years have kept stopping me in my tracks. I can confirm I have now lost all fitness! I thought about signing up for a half marathon, but I am due to have further surgery later this year and don't know when that will be. So I have set myself more of a long term challenge....

I am going to run 350km between now and Christmas.

I can't currently run more than 2km, and I am expecting there will be at least 4-6 weeks post surgery later in the autumn where I can't run at all, so this is going to be quite a challenge for me. But it will be worth it if I can help raise a bit of money for Secondary1st because this research will help save lives.

I will keep a record of the distances I have run and when here on my blog.

Tuesday, 5 July 2016

So (having postponed my original appointment) tomorrow is my first annual Oncology review ie check up with the cancer doctors in the cancer clinic. This will be the first time I have had any sort of cancer check up since finishing radiotherapy last year. Apparently they will want to examine me to check for lumps that might be cancer, and find out how I am to check for symptoms of cancer, monitor any ongoing side effects of original treatment, and monitor side effects of ongoing treatment (tamoxifen). Basically, what kind of state is your body in now? So I've been thinking my way around my body and what's what at the moment, and while I am thinking about it, I thought I'd also write it down.

BrainI definitely have Chemo Brain. When I was first diagnosed and heard others talk about Chemo Brain I thought it was just a made up thing by members of YBCN. I was wrong! It's a real thing, but there's a lot of research still to be done to fully understand it. Chemo is poison that kills cancer cells. It also kills healthy cells all over your body including your brain. Some parts of you recover quickly from chemo, like the inside of your mouth, other parts of you can take years to recover - like your brain. Chemo definitely played havoc with my memory. I still find myself having to ask people "What's the word for..." pretty much every day. There are so many words that I seem to have just lost. But I find that once I relearn a word, I have it back for good. (Something to do with little memory connections in my brain being rebuilt according to my friend Charlotte.)As well as a knackered memory, I also have bad concentration and bad focus which is unhelpful for everything from work, to conversations with friends, to watching tv programmes, to tidying up the house. If I ignore your text it isn't because I'm ignoring you. It's because I read it, got instantly distracted by something else (and then something else, and then something else, and then something else...), and just completely forgot. And if I do text you back, I'm probably in the process of being distracted from something else as I type and by the time I have finished my text to you, I will have completely forgotten what I was doing before. Ah well. Sorry. I just keep my fingers crossed it will improve over time - although apparently Tamoxifen doesn't help with cognitive function, and I'm on that for another 9 years!

Lady bitsWell, my internal lady bits got well and truly fried to shit by chemo. I have had no sign of a period since September 2014, after chemo number 2. Some women never lose them, some lose them for a few months, some for longer, or forever. You never know what could happen but it definitely looks now like mine are gone for good. (This means I have been in the menopause - which also does not help with brain performance.) No matter anyway, I'm having the lot chopped out later this year before any ovarian or womb cancer has opportunity to pop up too. Plus - it's actually a good thing in terms of my risk of breast cancer recurrence. Fried ovaries means less estrogen (aka cancer fuel) which is good. (If you don't like TMI then move on to the next section now.) I have however experienced the joy of non-hormonal Tamoxifen + Copper Coil "periods". The first was the worst. In a nutshell, imagine a murder scene in the bathroom at least once an hour every hour, and pain like someone is shoving a bread knife in your stomach.

Weight There's 2 stone more of me now than there was before I got cancer. It's a combination of reasons. I gained most of it when I was undergoing cancer treatment. Since then I have spent most of the time up until a few months ago pretty much banned from any meaningful exercise, and in addition to this, Tamoxifen makes it hard to lose weight. Then there's all the "fuck it" eating and drinking I have indulged in. So I am going to have to really put some effort in on exercise now to get back to the weight I was. Having spent so long frustrated at not being able to exercise, it finally went on for so long that I just lost the motivation and drive to go out and run. This is not helped by constantly being knackered.

TirednessThis is playing on my mind a bit recently. For example, yesterday (Monday), after a pretty quiet and relaxing weekend, I had to go back to bed at 9.30am because I was simply too exhausted to carry on with the day. Ridiculous. I don't think my tiredness can be classed as fatigue as it is usually not as bad as that, but I am getting frustrated with how long it is taking to get my normal energy levels back. I was asking about it on the YBCN forum earlier and I am definitely not the only one which is reassuring - I'm glad it is "normal" - but I wish there was a way to just fix it. There isn't. I've been reading up on it and the advice is what you would expect - try and eat well, try and exercise, try and get good quality sleep, rest when you need to, get support from other people etc - but ultimately, it will just take as long as it takes to recover and get your pre-cancer energy levels back. Once again, menopause and Tamoxifen also add to this. (It's no wonder it's nickname is Tamoxibollocks.)

TitsAs far as I know there's no cancer in them so that's the main thing. Aside from that though they're still "under construction". I've practically lost track of all the surgeries and procedures I have had but the most recent is the first stage of nipple tattooing. Yes - if you don't class the 4 little radiotherapy markers I have, my first tattoo is a tattoo of a nipple! At this point my chemo brain has kicked in and I can't think of the word I want. It's definitely not "showbiz" but I can't for the life of me find the word I want so it'll have to do.My first tattoo is of a nipple! Showbiz!#facepalm Anyway. The tattooing will be done gradually over a few sessions (better to build up the colour bit by bit using pigment and get it right and natural looking, than get overenthusiastic with ink and end up with two targets on your boobs. Their words not mine.) It is done in the Micropigmentation Clinic in Burns and Plastics at the Hospital. The doctor and nurse that saw me have also referred me to another department because of my surgery scars which apparently are hypertrophic and need some attention. Like I said though - none of this really matters as long as there isn't any cancer in there.

Two other tiny gripes...Nails - they have still not recovered from chemo. Weak and bendy, and still not properly attached to the nail bed. But it's nothing some nail polish can't hide. Veins - they've recovered a lot since chemo although I did manage to explode one in my hand a few months ago by knocking it. My biggest fear was lymphedema - but I keep getting lucky escapes with that.

Anyway... having been reading about the signs of secondary breast cancer in the lymph nodes, brain, lungs, bones and liver (the places breast cancer can spread to), aside from the tiredness, I don't think I have anything to worry about. And in the absence of other symptoms, the tiredness is most likely just cancer treatment/ menopause/ tamoxibollocks....

SO FINGERS CROSSED NOTHING SCARY IS SAID OR DONE AT ONCOLOGY TOMORROW.

If you have read this far... thank you! I look forward to the day when I will stop being a cancer bore. But for now, I'll try and make up for my waffle with some cute pictures of my dog.